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Latina/o and non-latina/o brain injury and dementia patients' and caregivers' health: An actor/partner interdependence model

Background: The interdependence between patient and caregivers' health, which is when the patients' and informal caregivers' emotion, cognition and/or behavior affects that of the other person is well documented among dyads experiencing cancer and heart disease, but scant research has assessed interdependence among those with brain injuries or dementia and Latina/o populations.

Mon, 04/05/2021 - 17:32

Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers

Background: The prognosis of patients with brain tumors is widely varying. Psychooncologic need and depression are high among these patients and their family caregivers. However, the need for counselling and need for referral to psychooncology care is often underestimated.; Methods: We performed a single-institution cross-sectional study to evaluate psychooncologic need, depression and information need in both patients and their family caregivers.

Wed, 01/13/2021 - 13:26

Psychometric characteristics of the WHOQOL-SRPB Scale in a population of stroke survivors and caregivers

Purpose: Studies have shown that spirituality plays an important role in enhancing the quality of life of stroke survivors and their caregivers. Spirituality has been associated with positive patient and caregiver outcomes, so a valid, reliable measure of spirituality is important. It has not been tested with stroke survivors and their caregivers, so the aim of this study was to evaluate the validity and reliability of the World Health Organization Quality of Life Spiritual Religious and Personal Belief (WHOQOL-SRPB) scale for stroke survivors and their caregivers.

Sun, 12/13/2020 - 17:21

The evidence supporting educational videos for patients and caregivers receiving hospice and palliative care: A systematic review

Objective: The purpose of this study is to explore the evidence surrounding educational videos for patients and family caregivers in hospice and palliative care. We ask three research questions: 1. What is the evidence for video interventions? 2. What is the quality of the evidence behind video interventions? 3. What are the outcomes of video interventions? Methods: The study is a systematic review, following Preferred Reporting Items for Systematic reviews and Meta-Analysis (PRISMA) guidelines.

Sun, 11/29/2020 - 12:12

Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS)

Background: Patient, Carer and Public Involvement (PCPI) should be embedded in health care research. Delivering PCPI can be challenging, but even when PCPI is carried out it is rarely reported resulting in lost opportunities for learning. This paper aims to describe PCPI in the OSCARSS study, a pragmatic-cluster randomised controlled trial with an embedded economic and process evaluation. Methods: A carer research user group (RUG) co-developed OSCARSS to evaluate how to best deliver support to caregivers of stroke survivors.

Wed, 09/09/2020 - 15:02

Health literacy and health communication training for underserved patients and informal family caregivers

Communication training effectiveness for health care providers has been well documented, however patient and caregiver training may present a prime opportunity to mitigate communication challenges that provider-only training cannot. The aim of this study is to describe the multi-step process of adapting a national, provider, health communication training program (COMFORT) for use with underserved patients and caregivers who (1) are not regular consumers within health care systems and/or (2) do not have ready access to providers.

Tue, 08/11/2020 - 13:09

Recovering together: Building resiliency in dyads of stroke patients and their caregivers at risk for chronic emotional distress; A feasibility study

Background: A stroke is a sudden, life-altering event with potentially devastating consequences for survivors and their loved ones. Despite advances in endovascular and neurocritical care approaches to stroke treatment and recovery, there remains a considerable unmet need for interventions targeting the emotional impact of stroke for both patients and their informal caregivers. This is important because untreated emotional distress becomes chronic and negatively impacts quality of life in both patients and caregivers.

Mon, 07/06/2020 - 15:24

Measuring quality of life in life-threatening illness - content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers

Background The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items.

Mon, 07/06/2020 - 15:04

Burden of Illness in Not Adequately Controlled Chronic Hypoparathyroidism: Findings From a 13-Country Patient and Caregiver Survey

Objective: To address knowledge gaps regarding burdens associated with not adequately controlled chronic hypoparathyroidism.; Design: Global patient and caregiver survey.; Study Populations: Patients with chronic hypoparathyroidism not adequately controlled on conventional therapy and their caregivers.; Measurements: Health-related quality of life (HRQoL) and health status were evaluated using the 36-item Short Form version 2 (SF-36 v2.0) and Five-Level EuroQoL 5 Dimensions (EQ-5D-5L) instruments, respectively.

Sun, 01/12/2020 - 22:17

Stakeholder Perspectives on the Biopsychosocial and Spiritual Realities of Living With ALS: Implications for Palliative Care Teams

Context: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS.

Thu, 10/10/2019 - 12:11

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